Avery came home on Friday morning and things are been far from boring with him. He was a little junky before leaving and Children's would have gladly kept him there b/c they suspected he still had a bit o pneumonia. As far as I was concerned I wanted out of that place and felt comfortable handling Avery at home. He was so exhausted on Friday that he fell asleep at 3pm and did not wake until 8am. We put him on BIPAP b/c he was breathing fast. Well the poor kid woke up in the morning with huge blisters all over his face from the mask. He usually does not wear it that long but his body really needed it.
On Sat. he was a complete wreck. He was really working hard to breath despite suction and nebs. I was very close to calling an ambulance but I was able to stabilize him for the night. He continues to be really conjested but better than he was on sat.
I have just so many emotions going on right now: Frustration, fatigue, worry, scared, angry. It seems right now every way we turn there is NO good answer for Avery. He is colonized with a couple of big infections that can ultimately kill him. The side affects of putting him on long term antibiotics is far worse for his body. He needs a central line to survive and yet he is colonized with this candida that lives in his gut. So we can very well be in the same situation we were last week only with a worse outcome. He also is colonized with this pseudomonas which is causing chronic pneumonias which can ultimately kill him. UGH UGH
It is all just scary stuff and I feel that he is just slipping away. I just cannot imagine life without this little guy. But it is the reality of the situation. All it takes is one bad infection and our lives will be devasted.
I'm sure tomorrow will be a better day but for today this is just what I feel and it SUCKS. This kid did not ask for this and neither did we but it just IS.
7 comments:
Hugs to you my dear. You know where to find me if you need an ear.
Love, Nena
Hugs to you and Avery. Trust in him with all your heart! Take one day at a time.
Love,
ES
It does suck.
Sorry things are so rough right now. I hope he can turn around and stay home.
Thinking about you guys.
I'm so sorry, and praying hard that he, and you all, get some good breaks soon. You must be absolutely wiped out, and at a time when you still need so much energy, that is so emotionally distressing, and that is alternately frustrating and heartbreaking. I don't know if it helps, but know that Avery's struggle touches our lives on a daily basis, and we, and I know many , many other people, however close or distant, hold him in their hearts.
Hang in there. Let us know what we can do to help you all hang in there.
Love Alison.
You are all in my thoughts and prayers!
Sarah
Nicky...the ONLY answer...."GOD IS IN CONTROL". You're all in my heart and in my prayers daily...Love, Donna
Nicky, know that SHey and I are praying for your whole family! The mito battle is a terrible one and my heart goes out to you. We miss you and do hope we can all get together someday... thinking of you always!
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